Saved by a Selfless Gift
Husband and wife Akil and Toya Thomas felt fortunate to become a recipient and donor in a special chain of kidney donations.
When Akil Thomas started vomiting every day in the spring of 2011, he initially thought he had the flu. But when the problem continued for weeks, his wife Toya insisted they go to The Mount Sinai Hospital emergency room, where doctors ran tests that resulted in a shocking diagnosis: Akil was in end stage renal failure with only three percent of his kidneys functioning. He was admitted to the hospital for a week of testing then sent home to follow a regimen of blood pressure medication and regular nephrologist visits with the understanding that he would soon have to start dialysis.
“It was a lot to take in,” says Akil, a 41-year-old husband and father living in New York City. “But I knew I had to stay strong for my wife and son. What I told them was: This is not going to be our life; we’re going to defeat this.”
But staying strong proved challenging throughout the fall as the vomiting persisted and fatigue intensified. Finally in November Akil’s doctor decided it was time to start dialysis, and the Thomas’s were given a choice between hemodialysis (which would involve visiting a center three days a week for four-hour sessions) or peritoneal dialysis (which would involve being connected to an at-home system for 10 hours each day while he slept). Akil chose hemodialysis and began coming to Mount Sinai every other day for therapy.
“And that was when our journey really started,” says Toya of the treatment schedule and the draining effect it had on her husband, who frequently felt fatigued and sick. “It was like I was looking through glasses that didn’t belong to me because I was seeing something that couldn’t be my life. We went from being active parents with a thriving teenager and traveling all the time to everything changing so drastically. I’d have to wake up in the mornings and tell myself: ‘This is my today; not my forever.’”
When the hemodialysis schedule and dietary restrictions proved too difficult, Akil switched to peritoneal dialysis. Although it was a relief to reclaim some control by doing therapy in the comfort of home, the Thomas’s had to juggle medical equipment and monthly deliveries of supplies.
Toya was tested to determine if she could donate a kidney to her husband, but she wasn’t a match. And with the wait time for a new kidney through the New York Organ Donor Network estimated at 7-9 years, the Thomas’s assumed this would be their life until an organ became available.
Another Option Emerges
In September 2011 Akil and Toya were at Mount Sinai for an exam when Scott Ames, MD, made an unexpected suggestion: “Did you know you could be part of the ‘swap program?’” Dr. Ames explained that in cases where a patient needing a kidney has a loved one who is willing to donate but isn’t a match, both patient and loved one can be entered into the National Kidney Donation Registry, a system that tracks other unmatched donors and recipients throughout the country. The Registry vets all those people to identify chains of “swaps,” so that Akil, for example, could receive a kidney from a stranger matching him, and Toya would in turn donate her kidney to a stranger matching her.
“I was ecstatic,” Akil says of the opportunity. “I thought our prayers had been answered.” In May 2013, after meeting certain safety guidelines, Akil and Toya were entered into the system. At the end of August, a Mount Sinai transplant coordinator called to say matches had been identified for each of them, and their surgery date would be October 8.
In the coming weeks as arrangements solidified, Akil and Toya would learn about their respective donor and recipient. Akil’s donor was a wife and mother from San Diego, whose husband had altruistically donated a kidney (meaning offering up an organ for donation to a stranger) the previous year, and she was inspired by his gift to also offer her kidney. Toya’s recipient was a patient at Johns Hopkins who had been “in the system” waiting for a compatible donor for two years, and Toya was the first person to match. “It hit me that if I’m the one person to be a match, after everything we’d gone through I was supposed to be here,” Toya says.
The Turning Point
“The morning of the surgery I was actually excited to be at the hospital,” says Akil of the few hours before his procedure on Tuesday, October 8. “I felt like my life was about to go back to normal—going to the park with my son and traveling with my family. Plus I had a lot of trust in Dr. Ames.”
“I was petrified,” counters Toya, who was waiting for her own procedure in the room next door. “I had always been the one waiting for Akil to come out of a procedure—this time we were both going in.” But Toya was committed and began her surgery with Juan Pablo Rocca, MD, at 7:30, while Akil’s procedure with Dr. Ames started at 10:00. Both came through with flying colors, with Akil, especially, having a very positive response.
“It was like he jumped out of bed running,” Toya says, “while I was like the turtle trying to get into the race.” With the help of the Mount Sinai staff, husband and wife progressed well in the four days before their discharge. “Everybody on that 9th floor—the nurses, the guys who delivered the meals—everybody was just wonderful,” says Toya. “And that new donors wing is something to talk about—I had a suite!”
It was the day after surgery that Dr. Ames told Akil the full story about his donor: The husband and wife had altruistically given their kidneys despite the fact that their two children suffer from rare medical conditions that had required years of surgeries and intense care.
“People keep telling me what a good thing I did for Akil, but of course I’ll do anything to save my own husband,” says Toya. “It was his donor who did a truly great thing—and I will never be able to thank her enough. The fact that she gave something up to whoever was in need so selflessly is a kind of humanity you don’t find in 2013. And if anybody who has that much humanity in them is now a part of Akil, we’re going to be ok.”
A New Life
Although Toya’s recovery at home involved initial challenges like fatigue, gas, and “tolerable” pain, Akil was immediately thriving. “He has a spring in his step and his eyes are brighter,” Toya reports. “Everything about him looks so different.”
For Akil, the journey back to health has filled him with a profound sense of gratitude. “I live for my wife and son, and I think this was put in front of us to make us stronger as a family,” he says. “I’d always told them we were going to get over this. And on October 8 we defeated it; our lives went back to the way we knew it, and I feel so blessed.”
And Akil adds one more thing: “One day I would love to talk to or even meet my donor—just to give my thanks and hug the person who literally saved my life.”
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